Information for Health: A Strategy for Building the National Health Information Infrastructure Report and Recommendations From the National Committee on Vital and Health Statistics

5. LEADERSHIP AS THE CORNERSTONE OF IMPLEMENTATION

Gaps and Barriers

Testimony at the Committee's hearings on the NHII in 2000 and early 2001 highlighted limitations in leadership, resources, standards, privacy and confidentiality protections, and consensus about appropriate information sharing as major impediments to the development of the NHII. ^8-11 It is clear that the chief barriers are human and institutional, not technological. In particular, many speakers focused on the lack of a strong Federal presence to guide the development of the NHII as the most significant gap impeding its realization. The Government is already making, and has made, critical contributions to the development of the information infrastructure — some of them described above. However, these contributions have taken the form of seeding rather than leading the process. What is needed now is a shift in focus from the parts to the whole.

The Committee heard calls for Federal leadership to bring about collaboration between stakeholders in the private and public sectors and among all levels of government. The Federal Government's responsibility for strengthening national privacy protections and supporting the development and implementation of standards also was noted, along with the need for new and expanded Federal funding. This infusion of energy, resources, and direction could help organizations with existing responsibilities for health information work together for maximum benefit. The urgency of improving health communication and information flows has increased greatly since the hearings, but the nature of what is needed, as laid out in this report, remains essentially the same.

Besides strong Federal leadership, the development process needs to engage a broad range of stakeholders. Many sectors, organizations, and population groups were described in the hearings as underrepresented in NHII development to date — not only consumer advocacy and health organizations, providers in small or isolated practices, community organizations, and many public health programs, but also standards development organizations, medical device manufacturers, insurance companies, and employer groups. This situation suggests that while some groups have been working hard to envision and stimulate the NHII, many other stakeholders either have not yet recognized its potential benefits or lack the resources to participate in its development.

Many stakeholders now and in the future will share the cost of building the NHII, but guiding and creating synergy among diverse investments, promoting standards, stimulating growth, and monitoring progress are duties that rest with the Federal Government. This calls for a combination of commitment, money, and vision. The areas where Federal funding is needed are outlined in NCVHS recommendations 1, 2, and 3 below. But money alone will not make the NHII happen; spending will be cost-effective only when it is guided by a national health information policy and implementation plan, also discussed in the recommendations. Without these, uncoordinated spending on information and communication capabilities by individual stakeholders, including the Federal Government, could exacerbate fragmentation and actually make future growth more difficult.

The examples of other countries are instructive in this regard. Over the past decade, Canada, Australia, and the United Kingdom have committed large sums to developing and implementing national information strategies; they have also officially adopted many U. S. standards. In 1998, Canada budgeted Can$ 95 million dollars for its 4-year Roadmap Initiative, and it now budgets more than Can$ 1.5 billion dollars a year for its health information infrastructure (Infoway), with an additional Can$ 500 million in Federal funds committed in 2001 to support a private company, Canada Health Infoway, Inc. (mentioned in Section 4). ^36,37 The British government committed more than £1 billion in 1998 to a 7-year initiative to build information and communications applications for its health sector. ³⁸ In each case, the significant spending is tied to a national vision and strategy. In the United States, Federal funding is scattered among multiple health and technology agencies with no overarching plan or coordination. Apart from a few efforts in the private and public healthcare sectors, mentioned in Section 4, there is no sustained financing for information technology investment or e-health service delivery. The series of events unleashed on September 11 particularly highlighted the lack of sufficient Federal funding to build the public health infrastructure all the way to the local level, the front line of public health services.

Disparate Responsibilites Create a Fragmented Environment

This report has shown that many NHII components already exist and that several entities have helped envision the national health information infrastructure. Moreover, numerous Federal agencies already have responsibilities for specific functions that are critical to the development and implementation of the NHII. Although the sheer number of activities offers a lot to build on, it is also a significant constraint. The current distribution of responsibilities creates a fragmented environment of separate programs governed by sector-specific mandates and policies. Transforming these diffuse elements into a comprehensive system of systems in accord with the vision requires the introduction of an entirely new set of energies, resources, and perspectives. One of the chief reasons that NCVHS recommends focused Federal leadership as the NHII evolves is that without such leadership the multitude of existing and new activities are far likelier to work at cross-purposes than to be additive and complementary.

Because of its mandate, HHS encompasses numerous agencies whose core missions or specific programs touch on the full array of NHII areas. (See Table 4.) Each of these will continue to play a vital role in their specific areas to ensure the NHII's development. HHS and the U. S. Departments of Defense and Veterans Affairs will have central involvement in the NHII because of their direct responsibilities to provide either health care or health insurance for millions of Americans.

Multiple Federal departments currently fund numerous initiatives and programs to promote access to computers, the Internet, telemedicine, and reliable health information. HHS, DoD, and VA have longstanding programs in telemedicine. The U. S. Departments of Commerce, Education, and Housing and Urban Development all direct programs that provide computer and Internet technologies in communities, and in some cases in individual homes. Healthy People 2010 includes an objective to promote household Internet access to extend the benefits of e-health; it also includes an objective to improve the quality and privacy practices of health Web sites. The umbrella Federal gateway, FirstGov.gov, includes health information as one of its main topics, using the health portal healthfinder® and other specific HHS Web sites as content sources. The National Institutes of Health, and the National Library of Medicine (NLM) in particular, are a premier source of both scientific and consumer-oriented information across the full spectrum of biomedical issues.

Numerous national institutions and entities have responsibility for information technology research and development and advising on information policy and programs. In addition to its responsibilities as an information provider, NLM has funded research on the Next Generation Internet and medical informatics.

As noted above, NCVHS is the advisory body to HHS and Congress on health information policy. The Institute of Medicine and the National Research Council, chartered by Congress, provide authoritative guidance on health and technology issues underpinning the NHII. The National Science Foundation has a leading role in identifying and advancing the technology research agenda. The National Coordination Office for Information Technology Research and Development oversees the crosscutting $2 billion Federal information technology research and development budget. The President's Information Technology Advisory Committee provides advice and guidance on all aspects of high-performance computing, communications, and information technologies.

States and local communities are deeply engaged in health improvement and services for their populations. States and communities provide public health infrastructure and the healthcare safety net. States also are responsible for licensing physicians and pharmacists. State licensure currently results in a diverse patchwork that is at odds with the NHII requirement for seamless and portable health care for a mobile population. New forms of Federal-State cooperation will be required to achieve the full benefit of care that goes beyond geographic boundaries.

Standards development organizations and medical terminology developers are spearheading the work to recommend information transaction standards and clinically specific terminologies as described in Section 3. The HIPAA Designated Standards Maintenance Organizations are now authorized to lead the ongoing process of maintaining and revising standards. These efforts have been a locus of public/ private collaboration, with strong NCVHS involvement, since HIPAA was enacted in 1996.

Several foundations are funding important research into areas touching the personal health dimension of the NHII, including the California Healthcare Foundation (www.chcf.org), the Robert Wood Johnson Foundation (www.rwjf.org), the Markle Foundation (www.markle.org), and the Pew Foundation's Internet and American Life Project (www.pewinternet.org). No national consumer advocacy group, however, has adopted consumer e-health as a major part of its agenda.

Activities and responsibilities such as those mentioned in this partial inventory have invaluable contributions to make to the evolving NHII. No existing entity, however, has the experience or authority to coordinate the activities of all the others and to create synergy among them. The question, then, is how to support all current and potential activities within a framework that maximizes coordination, collaboration, and innovation. After studying this question and consulting with many stakeholders, the NCVHS has concluded that a new senior position and office at HHS, equipped with adequate funding, are required to oversee and coordinate a broad range of policy, research, and program activities in different sectors.

Operationalizing the Recommendations

The NCVHS recommendations in the next section spell out activities and roles for each stakeholder group in building the NHII. The 27 recommendations are directed to 9 categories of stakeholders:

• The Federal Government, including the U. S. Department of Health and Human Services, Congress, and Federal health data agencies
• State and local governments, including State and local data and health agencies
• Healthcare providers, including membership and trade organizations and healthcare organizations
• Health plans and purchasers
• Standards development organizations
• The information technology industry
• Consumer and patient advocacy groups
• Community organizations
• Academic and research organizations

Of necessity, the recommendations are presented sector by sector. However, if they were laid out in a matrix, it would be apparent that the stakeholders' roles are parallel and often interdependent. For example, Federal and State governments as well as providers are advised to create strategic leadership mechanisms for the sector(s) for which they are responsible. All stakeholders are encouraged to collaborate with other organizations and agencies, in addition to carrying out actions that are particular to their domain and expertise (e. g., standards development, advocacy, or research).

The Committee believes, as has been stated, that primary responsibility for coordinating development of the NHII rests with the Federal Government and HHS specifically. This coordination must be both horizontal and vertical — horizontally, across providers, consumers, public health programs, standards development organizations, payers, Government agencies, academic and healthcare institutions, and others, and vertically, across local, State, and national entities. The coordination also must explicitly encompass the personal health, healthcare provider, and population health dimensions rather than focus on any single area.

The Committee recommends that this effort be led by a new, high-level office within HHS. It should have the resources and mandate to coordinate all efforts, internally and externally and in both public and private sectors, and to directly fund strategic crosscutting activities. At the same time, the individual HHS agencies' NHII-related portfolios need to be strengthened and new resources added, under the general coordination of the new office.

Should it accept the recommended leadership role, HHS will need to assess the associated resource needs and integrate them into its budgetary process. Former Assistant Secretary for Health Philip R. Lee, M. D., offered his thinking on funding for the NHII at a regional hearing. ³⁹ In a written supplement to his testimony, he said, "We recommend a ten-year Federal investment in developing the NHII that will require a $14 billion investment and will generate both social and financial returns to the public." ^f Given the variety of tasks that would be encompassed, such funding would be spread across the White House, existing agencies, nongovernmental organizations, and the new office. This level of commitment is proportional to efforts in Canada and the United Kingdom.

The most important function of funding is to support the new HHS office's pivotal role in coordinating and integrating the activities of the stakeholders and convening them for this purpose. Other HHS activities on the NHII that also need support include information technology research and development; research into effective e-health technologies, applications, practices, and dissemination; investments for information technology deployment in health care and population health; dissemination networks (for the public and professionals) and integrated portals; standards development and implementation; training; data development, management, and integration to implement the vision for 21st-century health statistics; and reimbursement for pilot projects and clinically proven e-health services.

It must be understood that this emphasis on HHS leadership does not suggest a top-down, Government-controlled process. Instead, the recommendations outline a Federal role that promotes the vision and facilitates consensus on direction and process and then helps the collaborators to keep moving as intended, providing support as needed and monitoring progress. The Government is called upon to help set the stage for private innovation, to catalyze change through visioning and standard-setting, and to help build incentives, in addition to performing such traditional governmental functions as providing material support, widening participation and access, and ensuring privacy and confidentiality protections.

Comments in the hearings on the NHII and a review of successful models and best practices in the United States and abroad suggest that several attributes are critical for a collaboration that will build the NHII. In addition to inclusiveness and broad-based participation in decisions, formal mechanisms for reaching compromise on controversial issues will be needed. Stakeholders' motivations vary and sometimes may even conflict; to succeed, the collaboration must account for the full range of interests and motivations. Other important attributes are a clear leadership mandate, an appropriate distribution of responsibility and accountability, and an agreed-upon process and milestones.

While none of the following is a perfect or complete example (and other examples could be cited), three well-documented cases illustrate at least some of these attributes. The first is the Canadian Health Infoway and Information Roadmap, described in Section 4. Those in charge of that multiyear process of consultation, planning, and implementation have gone to considerable lengths to involve multiple stakeholders — providers, consumers, business people, policymakers, and more — at local, provincial, and national levels.

The second example is the National Occupational Research Agenda (NORA) public/ private consensus process used to develop a research agenda for the National Institute for Occupational Safety and Health (NIOSH). ⁴⁰ Some 500 organizations and individuals outside NIOSH provided input into agenda development, helped identify 21 priorities, and committed themselves to implementing the agenda. Many organizations are using NORA (which stimulated a 133-percent increase in Federal funding in this area) as a model for their own partnership and planning initiatives. Examples of organizations using NORA include the European Agency for Safety and Health at Work, the U. S. Department of Defense, the Japanese National Institute of Industrial Health, the State of Maine, and the Chemical Industry Institute of Toxicology.

The final example of collaboration is the highly decentralized but well-coordinated process used to develop Healthy People 2010, the Nation's third decade-long prevention initiative. Leadership in 28 specific areas was delegated to agencies with primary mandates in those areas who worked closely with relevant professional and voluntary organizations. Regional hearings and online comment opportunities ensured broad input from the general public. The Assistant Secretary for Health provided overall leadership and coordination. Implementation is now equally decentralized, with virtually all States and many localities adapting Healthy People to frame their own health initiatives.

Given stakeholders' varied interests, stages of readiness, and degrees of receptivity to the NHII, the proposed new HHS office will need to use both incentives and requirements to stimulate the development process. In the Committee's view, devising these stimulants should be one of the Federal office's first tasks. Incentives and requirements may be linked as part of a national plan supporting a national health information policy. For example, grants to providers and public health agencies for investment in standardized systems might require that they incorporate standards for sharing personal health information (under strict protocols for de-identification unless mandated by law).

The standardization and administrative simplification process sparked by the 1996 Health Insurance Portability and Accountability Act is an example of this interplay of incentives and requirements. Other incentives might include differential reimbursement to providers who have implemented information systems consistent with NHII information flows, including decision-support tools for providers and patients. Other requirements might include a charge to Federal agencies to produce plans for bringing current programs into consistency with NHII information flows within 5 years.

Three Major Stages To Realize the NHII

The Committee envisions three major stages in the process. The first stage has five major tasks: creating the recommended senior position and lead office within HHS with sufficient authority and funds and building relationships with centers of leadership in HHS and other agencies; fleshing out the vision as a national health information policy and implementation plan; establishing incentives and requirements; launching a comprehensive standards acceleration process; and committing the resources implicit in each of these tasks. Taken together, these actions would demonstrate a strong governmental commitment to the development of the NHII.

The second stage centers on developing and expanding collaboration at national, State, and local levels and with the private sector to complete and confirm the implementation plan. This stage will involve the most extensive and substantive forms of collaboration.

The third stage involves carrying out the implementation plan in all relevant areas of the private sector and all levels and areas of government. This stage will include a feedback loop in which progress is monitored and issues requiring further action are identified.

NCVHS suggests that stage one be completed within 2 years, stage two within 5 years, and stage three within 10 years. Looking to its own role in this process, the Committee expects its responsibilities as HHS's primary external advisor on health information policy to grow more focused as HHS moves into its recommended leadership role. The Committee would welcome annual reports from the Department on its progress toward implementing the recommendations, beginning in 2002. The Committee also anticipates that it will continue to hold periodic hearings to assess NHII activities in the public and private sectors.

Before turning to the recommendations of the National Committee on Vital and Health Statistics, let us review the key messages of this report. The heart of the vision for the NHII is sharing information and knowledge appropriately so it is available to people when they need it to make the best possible health decisions. To serve the Nation's health needs, the NHII must make information available to individuals, healthcare providers, public health agencies, policymakers, and all others whose decisions shape health outcomes. It must serve all individuals and communities equitably; enhanced electronic capability must not be allowed to serve preferentially the segments of the population that are already most advantaged. Better safeguards for privacy, confidentiality, and security are hallmarks of the NHII. The evolution of the NHII is already under way, but so far progress is highly fragmented. Recent events underscore that an effective NHII is not a luxury, but a necessity; it is not a threat to our privacy, but a vital set of resources for preventing and addressing personal and collective health threats. Realizing the potential of the NHII will involve changes in personal, institutional, professional, civic, and governmental practices and in the relationships among these domains. Experts and industry representatives told the NCVHS that the Federal Government has a key role to play in these developments. But the Government cannot act alone; what is needed is a dynamic, nationwide collaborative venture for this purpose. The following recommendations outline a process for bringing that about.

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